Trying to be OS with a Chronic Health Condition

prepareathome

A know to a lot of people this would seem a daft thing to put, as whether you are healthy or not you can still be fully OS.

This for me is sadly not the case and I am sure for many others.

I just wondered if there are any others out there who can share tips.

I have ME; Fibromyalgia and maybe MS ( doctor positive but although CAT scan showed lots of lesions, spinal cord was clear and specialist I saw said he only considers people have MS if spinal cord shows something, sorry mind blank, cannot remember what its called but would show body is fighting inflamation or itself and so he just left my diagnosis as Fibro and ME, one of these days when I feel up to it will do as my doctor says and go for second opinion).

Anyway that is aside, what you have doesn't matter. Its if you have anything you can pass on that will help.

At the moment I am really struggling as going through what I call my sleep phase - I can sleep for 20 hrs or more and nothing keeps me awake, if I get up for loo I am almost doing so in my sleep and am fast asleep again before my head hits the pillow and even then only will go once or twice at most. When I am awake I am so very tired, and find it hard to do anything. I spend about 85-90% of my time in bed anyway, even when not in 'sleepy time' but I am awake and can do things sitting up in bed, and can get downstairs and cook but cannot do lots of cooking like batch cooking, can double up but that is the most. The weird thing is my waking periods during this time are almost always at night no matter what time I go to sleep and this I admit leads to depression in Feb/March as hardly seen any daylight - have bought a SAD Lamp and Biobulb to try and help this but its not the same.

Hubby is not a cook and so if I cannot make something he will cook something ready made like a pizza, pie - he wants something quick and anything I have made and frozen always takes longer to cook than bought things so we have to waste money on these things. I am at my wits end on how to feed him cheaply, especially as I have just sent in my ESA form and advisor who filled it in for me told me form is basically a joke and so is the medical and in reality I have no chance of getting it. He said I would on appeal most likely but that would take about 2 years and I would be on the lowest rate so our income which is already low as hubby on part time will be lower and we can barely keep ahead of debt as it is. Hubby is also under threat of redundancy in the New Year

Any spare cash I am buying extra food, as I see that as more of an investment that having cash in the bank, plus making sure we have everything in the house we will need over next few years at least.

I am hoping to try and grow my own vegetables and fruit next year - will make raised beds and hopefully will manage at least to get out at least once a week to check on them. So says he can get me broken pallets so hoping he will help me nail pieces together to make them. Have already bought some bags of top soil and compost and hope to buy more soon so will have them, and just for next year I had already paid to have a years supply of seedlings sent to me to see how I manage, as I know I couldn't grow all the seedlings I need, not and prepare the garden, hoping I manage and the next year start from seed.

I have joined the GC and realised just how much I spent last month, although a good part of the food I bought was to start building up a store cupboard.

I do have a sc but when I am like this food tends to be in it for nearly 24hrs, on low but it does tend to get rather overcooked, so use it less at moment than I normally would.

So am I sure there must be plenty of people on here who have similar conditions and manage and so am begging you to please share your secrets.

lillibet_dripping

Oh my! I do feel for you. I am learning to live with RA and also have good days and bad days.
On my 'good days' I make the most of batch cooking and freezing so that when the bad days occur and my hands are 'frozen' in a claw shape and I am unable to do anything with them, at least the children can pop something homemade in the microwave to eat.
I think your rocket garden will help once that is underway. It is also very theraputic (sp?) to spend time with nature, watching things grow and tending crops. The taste of home-grown veg far surpasses anthing shop-bought.

You are facing so many challenges. I realise that hubby is under threat of redundancy so it may be time for him to face a new challenge - COOKING! What about getting (from a charity shop:T) a simple student-type cook book so that he can learn the basics? Soup is really easy to put together (you will be able to use your own veg soon!) and bolognese, curry, chilli really easy to master.

Another thought to keep you going - we are fast approaching the shortest day, December 21st. This can only mean one thing - SPRING IS AROUND THE CORNER, THE DAYS WILL START GETTING LONGER AND WE CAN ALL GET OUT IN THE GARDEN AGAIN.
Hang on to that.......

Wishing you all the best
x

ragz_2

It's great that you want to grow your own veg but make sure your hubby will be able to help a bit, if you won't be able to get out there every day. We tried growing our own this year, DH was meant to be in charge of it but things got very neglected and we wasted a LOT of plants that died before they were planted out. Luckily we'd grown them from seed so it didn't cost us much financially but I was still really annoyed. If we do it again I will have to accept it is my job (along with everything else!) and go out every day and do it. The things that did really well with little input were the ridged cucumbers, so maybe grow things that you don't have to pay too much attention to. Tomatoes need a lot of feeding and watering (several times a day in hot weather, which is why ours died!).
Not trying to put you off, just want you be realistic.


Simple meals like pasta with a sauce are cheap and can be made in 15 minutes. Cook a batch of sausages on one day and they'll keep for days, can be cut up and chucked in with things like pasta or super noodles or instant mash to provide cheap 'meat'. If he will have pies and pizza, buy cheap ones! If he wants to eat junk rather than the nice HM stuff you make then at least don't let it be expensive...

You've really made me appreciate the condition, my Dad's ex wife had ME and I never really saw her with it bad but she spent a week in hospital recently so I guess it is quite bad, must be awful having an invisible condition like that. Try not to feel guilty, you're doing the best you can and it's not your fault you're ill. xx

rising_from_the_ashes

Just wanted to offer a (((hug))) and say that any tips will be hugely appreciated by me too!:D

I have Crohn's Disease, Ankylosing Spondylitis, Fibromyalgia, and a multitude of food intolerances, including being Lactose intolerant.

I live alone and still work full time as I've tried and failed to get some benefits which would allow me to cut my hours a bit (even a couple of hours a day would make a HUGE difference).:(

It takes me hours to get up and moving in the mornings (both joint wise and tummy wise) so by the time I get to work, I've been up for at least 3 / 4 hours which really doesn't help with the tiredness side of things.

By the time I get in from work, I am often utterly exhausted (and until you've suffered from this, you just don't realise how debilitating it can be) and either don't eat or eat rubbish as I just can't cook.

I have now started to try to batch cook at the weekends (when I'm not quite as tired) and this means I can take portions of the freezer during the week, so I am eating better (and it is having a positive effect on my Crohns).

I was going to attempt raised beds this year but didn't manage to get any built so that's my aim for next year.


Re the sc - could you put a timer on the plug to delay the time it starts cooking?

boultdj

Ragz and prepareathome, I would recomend lining the bottom of where you plant water hungry plant's with newspaper, also use the water raitaing crystal's,mean's you only have to water once a day with most plant's, but tomotoe's will still need doing twice a day. Also remember you don't have to grow everything outside, cress just need's a bed of cotton wool and a bright window.

mardatha

I've got ME and most of the time luckily I am pain free, what floors me is intense exhaustion when all I can do is lie on the couch with eyes closed. But while I'm in that mode my brain is still busy, plotting and planning .
Seconded what Ragz says, you need a husband who will do things. I found this out and mine is finally coming round. But I too could have had a better summer re GYO. I need somebody to dig and he wont.
Re food- tins of cold meat, tins of beans, tins of potatoes. They arent as nice as home made but they do for him when I'm ill. Bacon & eggs, salads. He can cook porridge which is filling & nice. Cook a big stew in the crockpot then take it out and put in fridge, get him to decant enough to heat up in a wee pot for himself. it will keep a few days. The hardest part with ME is getting things organised when your mind & body are both knackered. One of them has to work so I try and make it my mind :rotfl:but when you're really bad you can't.

hilstep2000

I have MS, and the fatigue is the worst part! You do need help with things. I have gooid and bad days too, sometimes I can't do a thng. On those days I go with the flow, then on a good day try and catch up. I try and do lots of batch cooking when I can, this helps when I can't do anything. I also grow my own veg, and had my garden made over this year. I had most of it paved, with just one raised flower bed and one raised veg bed. It is so much easier to manage, and I grew a lot of stuff that is now in the freezer!
Just a point, are you getting DLA (Disablity Living Allowence) ? If not, please apply, but get someone to help you with the form as it is a bit complicated. Your local CAB can help. This would provide you with more money to pay for, say, a cleaner, which is what I do. Really helps. Also have you got a local support group, ask your GP or look in the Library, because other people wity the same conditions can elp.

Hope this is helpful. If you need to know anyting about MS or have any questions, please feel free to PM me.

GreyQueen

Aww hun, that's a lot of brown stuff to land in one life.

I've had ME since my early twenties and in my thirties nearly died from a very rare metabolic disorder (won't give details as I'm one of the few sufferers in the UK) and am being kept alive by meds for that but it isn't curable and the meds have serious side effects in use (but not using them means I'd die.) What fun.

In addition, I have all the usual aches and pains and am probably starting the menopause........

The only trick that I've found is to rein in my natural temperament which is wildly-enthusiastic and bull-at-a-gate and become more selective in what I do, what I get worked up about and where I go.

It's sort-of a cost-benefit analysis; if I do X, it'll trash me for 2-3 days, how badly do I want to do X?

I work a 60% f.t.e office job and often have to lie down in bed for an hour when I come in before I muster the energy to get something for tea. It helps to cook something which will do for 2-3 nights so that I can just add veggies and have an easy cooking sesh.

I run a full-sized allotment which is 4/5ths cultivated and 1/5th nature reserve/ scrub meadow/ municipal tip. I can do about 2 hours physical labour on a good day, with breaks in between. I just soldier on. Last weekend I did 1 hour of forking manure into the ground on Saturday and was too poorly to leave the house on Sunday due to vertigo and tiredness.

My lottie is never as well-cultivated as I would like, my home is [STRIKE]often[/STRIKE] always untidy and I need to sleep 10 hours overnight and sometimes one more in the early evening just to function. I feel guilty that I don't see as much of my friends as I'd like and that I can't do more to contribute to the community - I had to change jobs and that meant a few more hours a week and that meant a little voluntary thing had to go as I couldn't hack it.:o

It's wretched suffering from hidden disorders like ours because people can't see your difficulties and probably only see you on the better days and times. Friends who have known me for 20 years still sometimes get horrified if they call me in the early evening and find me incoherant with fatigue or see me go white with exhaustion and all "spacey-eyed" but those are my realities and if you spend a few hours in my company, you'll see the full gamut.

The strategies which work for me are; try to synchronise your waking and sleep patterns to the natural day. I feel better if I do this. Obviously, I'm not currently going to bed at 4 pm but at 9 pm. Sleep in a very dark bedroom. Get up at 5 am in summer.

Regard time outside under natural light as being as critically important as food and drink. We need the daylight to re-set our natural systems. Make a real effort to get out as much as possble but even a few minutes are better than nothing.

Only this week I was hearing on Radio 4 that Scotland has the highest rates of MS in the world and they attribute this to the interaction of genetic factors with low levels of natural daylight. Other northern countries with similiarly-light-starved poplulations have diets rich in oily fish which mitigate the MS risk.

Veggies are important to health and the fresher the better. If I miss my veggies for even one day my energy dips. Fruit doesn't do the same thing.

I realise I risk getting my head bitten off, but I'd say if you're a vegetarian, give serious thought to trying to eat some oily fish or offal meats. We're an omivorous species and cutting out big chunks of our food groups could be unhelpful. I've been both vegan and vegetarian at various times and find an omnivorous diet is better for me.

Gt you GP to test your iron levels. A lot of women are low on iron due to menstruation and this will leave you weaker than you need to be.

Use your brain to save your back; think of ways you can streamline your home such as decluttering and minimalism, look for easy-care options when updating home decor and train any available resources such as OHs or older offspring to run the household and take a regular role in the day-to-day running of the home.

A pal with RA uses the internet to save herself a lot of trouble; grocery delivery and delivery of just about anything else.

If you can't get help from family or friends, could you hire a cleaner for perhaps even 1 hour a week to break the back of the chores? If someone did the heavy stuff, could you manage the rest better?

If I'm cooking something which requires standing over a stove , I try to cook something else at the same time. You'd laugh to see me stir two pans at the same time but I'm not very good at standing for any length of time, so getting double value for my time works for me.

Lastly but by no means leastly, be kind to yourself. :smileyhea

It isn't a character failing to have chronic illnesses. It doesn't mean that you are a bad person. HTH.

Chickenopolis

Hello prepareathome,

I had a large and very rare spinal cord tumour and brainstem cyst removed in 1998. In order to remove this it was necessary for the neurosurgeon to remove the laminae (spinous process) from the base of my skull to my bra line. Latest MRI's have shown a new cyst growing back in the spinal cord and it is being monitored. I have no feeling on my left side and therefore can't feel hot or cold or where my body is "in space" LOL. The bottom line is I am in pain most of the time and get very tired trying to walk in a straight line due to propreoception and neuropathy etc. Life is just a series of negotiations , I just have a few more things to negotiate than I used to

I did my degree in bed as I find it hard to sit ( weight of head due to laminectomies) . You have my sympathy OP ((hugs)). Stress does not help as it will induce muscle spasms, but pacing yourself , I feel is the answer. By focussing on what you can do, rather than what you cannot do , makes you approach things differently.

I work 30 hours per week ( recently reduced from 37 hours due to my health)and have changed my diet which has increased my energy levels no end. I used to sleep for most of the time when I was not at work and I basically had enough of this. OH has to deal with hot pans, opening things etc as my grip in my left hand is like a robot and squashes everything.:rotfl:I have not pushed a shopping trolley since 1998 as I cannot do this anymore and have to have someone with me to do the shopping .

I agree with the other posts around making a "base" sauce which you can freeze and use for many dishes. I am not being rude, I am just curious but can your OH not follow a simple recipe, with your guidance? Can he help you to chop and peel etc ? You may also be eligible for DLA (if you are not in receipt of this) or support from Adult Social Care if you have had an assessment of your needs in order to get some practical support around the home. If OH is your carer , he could also have his needs assessed.

I would say , speaking from personal experience, that when you have a day when you feel quite "perky" then you may try and overdo things . Its not worth it , just try and do a little at a time or you will be back to square one again.

I hope this helps XX

charlies-aunt

(((Hugs))) to you first of all and please don't beat yourself up as you sound like that you are doing a lot to help yourself. I have RA, immune mediated neutropenia and MS - and I can really identify with your struggles to keep on top of homecare, cooking, cleaning and finances.

I am trying to live a normal life but with adjustsments . . . which for me has meant lowering all my standards to "good enough" - the house isn't immaculate anymore but its "good enough", I no longer cook complicated meals - but simple slow-cookered meals with rice/baked potatoes/bread rolls/dumplings are cheap,filling and "good enough"

The other biggie for a control freak like me - is the surrender of being in control . . . . for example - Christmas will come and be celebrated even though I now give simple hm presents or gift vouchers instead of breaking the bank, spending hours searching for the perfect present for everyone and imaginatively wrapping them.
Food will be simple and enough - haven't the time energy or money to shop for and cook a massive Christmas spread that mostly ended in the bin by New Year.

I have spent most of my life being "Superwoman/Mum" - running everywhere to try and keep up, keeping all the plates spinning, all bases covered, all the i's dotted and the t's crossed - busy, busy, busy . . . until burn-out happened.

Life is not a rehearsal - you only get one life so live it as best you can. Television, films, magazines etc give us images of how the advertisers think we should live our lives - they do this to sell us stuff so we can live the dream of 'real' life and to tell us how we should style our lifestyle and choices . . . but its an illusion. Choose the life that suits you and live it - ultimately more fulfilling and less stressful than keeping up with the Jones.

Be kind to yourself - look after yourself, putting yourself under pressure to try and keep up is exhausting in itself. When you feel tired - do the bare minimum - life as we know it isn't going to end because you haven't dusted for a month!

I've rambled long enough - hope that some of my mutterings have been helpful - never feel alone as there is a community of folk in similar circumstances on the boards for help and support.

prepareathome

I want to say thank you, thank you to all of you, I knew i couldn't be the only one and here you are all struggling so hard and doing so well,:A

I used to to try to be superwoman, doing everything, not asking or expecting help so not being able to do things has I admit made me feel a failure I was always the one on call helping, so asking for help is still very hard, still not asking hubby as much as I should. Kids and rest of family don't help nor ask if I need it, am just classed as lazy - 'well you could do more if you pushed yourself' Don't see grandkids to often, not because am not allowed but because I cannot get to their homes, ' if you really love them you will come over'.

I have always been OS to a certain extent, preferring to do things myself, I have been growing vegetables for years in pots in back garden, but its tiny and on a steep slope and for a few years I couldn't get out onto it as no path and it was just to steep, but now have had a path put in with a rail so this summer was able to grow them again, but I want to grow more so going to convert side garden into raised beds. I have just had planted - had to pay as hubby won't for someone to do this - hedges, 100 of them as only a 3ft fence round it, so hoping in a few years it will be private, but not waiting till then, got some winter vegetables in there in a few raised beds ( but nothing surrounding them to stop grass encroaching) this year and have leeks, kale, lettuce, onions, radishes and I cannot remember what else out there and growing well. Only snag about getting out there is I have fallen over a few times and am so embarrassed, so will be glad when hedges are grown as I am on a main road. Side garden is massive I could easily grown enough for us for the year in it and still have plenty of room over.

My three main problems are pain, exhaustion and muddleheadedness - lucky they don't usually hit at same time. Its just never knowing how I will be from day to day or hour to hour - slept for nearly 24hrs yesterday, got up around 5pm and am still awake, tired yes but unable to sleep but when I do sleep I will most likely do so for another 20 hours or so then just be awake for a few hours then crash again - this usually only happens in the winter not the summer, have bought a sad lamp and biobulb for my room. Monday am going to Lidl, no matter what as they have one of those sun alarms clocks on special for £30 so hoping that might wake me up, as when the sleepiness hits I cannot stay awake or wake up properly till body wants to I just sleep through all alarms. At first hubby was so worried he called doctor out, and doctor tried to wake me and couldn't and when I did wake up boy was I quizzed on what meds I had taken, as she was convinced I must have OD on sleeping meds ( she gives me 5 a month for normal times as usually cannot sleep much then) but then accepted I don't take any - she knew I never asked for the sleeping tablets during those months as they are last thing I need. I think I make up for all the times I don't sleep from April to October by sleeping most of November - March.

Hubby will do vacumning, at first in summer he did it once a week but now it can be 3 weeks or more before he does it and it does get me down seeing the stair carpet looking so messy ( only place we have a carpet) as we have 3 dogs who shed all year round. We have a dish washer but even if I can't get downstairs for say a couple of days, when I do I find kitchen piled high as he will not put dishes into it. I sometimes feel if he would just do a little bit more that would mean when I am able to do things I could do more like batch cooking but instead spend the energy I have just making place liveable.

Mardatha, I know exactly what you mean, you are lying there so exhausted that you feel even breathing is to much but your mind is busy thinking of all the things you could be doing, and what you will do when the energy comes back, yes it doesn't switch that off.

One of the worst things I have found with the physical problems - I will admit my bladder has almost reached the stage when muscles just will not work so have to wear pads, usually thick ones nearly all the time, do still get odd days when it does behave mainly, the worst is not getting the feeling of needing to go it just happens, and I want to get washed and I cannot because I am to stiff, to exhausted, to sleepy or in to much pain and I feel so dirty. I can change the pad but not wash myself down there, its actually easier if its just the pain and stiffness stopping me to step into shower as the hot water eases that, but with the exhaustion or being so sleepy not a chance of that. I used to always have a shower in the morning and bath at night - do have a bath seat but as hubby uses bath as well its not kept in the bath so if I want one and he is not in I cannot have one. I try to keep as clean as I can. I have a long last got an appointment at local urology clinic run by nurses who specialise in these problems and am hoping they will be able to help ( not to wash me, I couldn't bare that but come up with some way I can do it myself) been on the waiting list nearly 2 years and I go in January.

It was funny I had advisor here other week to fill in ESA form for me as I am on IB and I could tell he thought there was nothing much wrong with me, he saw this middle aged fat woman who was to lazy to work. He kept asking me what I would do if DWP suddenly told me I had to go to a job then next day and I said I couldn't say I could as wouldn't know how I would be, and the look of disbelief he gave me. Then we went through the form and came to the part about bladder control and I had to tell him about my problem, then boy did he change and said how I would not fit into a work situation like that and suddenly became much more helpful. I know chances of getting it are low but with hubby only being on part time hours my money keeps us better off than him being on the dole. If he loses his job then it won't matter if I do get it or not but at moment we are able to pay for everything ourselves and don't claim anything else except i do now get DLA, it was a battle and went through one tribunal which was so horrible it stopped me trying to claim again for quite a few years.

Sorry nothing to do with OS.

Hubby is quite capable of following a simple recipe but he doesn't want to, so won't. He loves watching cooking programmes, really enjoys them, but has no desire to try it.

I know I must adjust to fit in with my new capabilities but that I know is my big problem, when i feel not to bad I try and do as much as I can before I crash, I know I should pace and when I actually do I have longer periods of being able to do things, but then I slip like the study is filled with junk and I needed to get to some bookcases, so it took me 2 months of waiting till I felt the day had arrived when I could so of course on that day I cleared a lot of the study. I collapsed on the floor eventually and had to call it a day and of course was bad rest of week. I know my own daft fault if I had just moved one or two things every day for those two months it would have been finished ages ago.

Chickenopolis what did you change in your diet as I to am so fed up with this tiredness I feel I sleep the winter away ( this is the 5th year of this) and each winter I have ended up very depressed by March where I have one night where I basically want to end it all and have to fight with myself all night - past two years have chatted to a nurse most of the night on NHS Direct, and then like an abscess that has burst, the next morning I am fine, totally fine no depression at all and none again till the next March as although I have everything else I do not sleep much at all.

I am feeling so tired now I have to stop - tonight its a pie I bought at farmers market, not OS I admit but they looked so lovely I thought just this once and I knew I would be tired, I had thought I would have been asleep by now.

I am going to make the pasta sauce again, and tell him its that or nothing lol - maybe if I put a big note on the front door so he sees it every day before he goes out he will take something out the freezer to defrost, his excuse will be by the time he sees it on the door he is ready to go out and to late to go to freezer - which is in hall behind the front door, I do think he has very slight Asperger's as he like to do things in a set way, must have everything of his laid out just so and must move it back if moved as really bothers him.

Sorry I really am turning this into a moaning thread and honestly not what I meant and will try not to any more.

Got to go eyes are closing.

You all just are so wonderful the way you just get on and do things and no moaning, I just hope I can learn to be like you all.

Hugs